Samuel and Me - Part 2

So as promised Part 2 of Samuel and me.  If you've read Part 1 you've had a tiny explanation as to Samuel's disability 22q11 Deletion Syndrome.  I would like to now share a few more things that affect Samuel and obviously us as a family.

As we found out Samuel is not a naughty boy, he is a child with a disability and he just struggles to get by as do so many other children with the same and similar disabilities.  It is far too easy for outsiders to assume children with various invisible disabilities are naughty, why don't you just come and ask if it bothers you that much.  So many parents experience this and it is a shame.

Samuel can get very hyperactive at times, particularly when excited about something, although tiredness is also a huge factor.  At night he can yo-yo up and down stairs for hours before finally giving in to sleep.  This then knocks on to the following morning as then Samuel refuses to rise from bed as he is still wiped out.  What follows is growling, shouting, huffing and puffing and sometimes hitting out.  Once he has dragged his body out of bed it then becomes a battle to get him into the shower and he has to shower as most nights he will have wet the bed, although recently medication is giving us a few dry nights.  Samuel is not keen on cleanliness for some reason, but once in the shower he is not too bad, although he has to be reminded to use shower gel.  So just getting him up and showered can take up to 45 minutes for what would generally be a 5 minute job.

Now Samuel also has the "fluff syndrome", that is he can be distracted by a piece of fluff, so this causes us to often have to repeat things 30 times and we cannot ask Samuel to do two things at once as his brain just would not process either yet alone one.  We don't ask Samuel to do any chores apart from bringing his pull up pants (due to the wet beds) down and to bin them, plus sometimes to tidy his room. 

Another habit of Samuel's is that he has a tendency to leave me a mud monkey log in the toilet!  He tends not to wipe, flush or wash his hands, and we have to constantly remind him, but this can be met with anger as he doesn't like doing it.  He just doesn't understand the importance of hygiene.  Plus, its nearly always me that gets my eyes burnt out by the poo odour! 

Samuel also has difficulties in showing empathy and appreciation.  He does appreciate things that are done for him, but as soon as anything is done he quickly wants to move onto the next thing and he perhaps doesn't act or show emotion as would be expected.  This can be deflating at the time but you have to quickly remember this is not deliberate.  One such example is that when we went to watch Hartlepool United last easter as a family for a special weekend, and we managed to on top of everything else to get Samuel to be a mascot.  Now to all other children that are into football this is a once in a lifetime experience and you would expect them to talk about this with everybody family/friends/school, and to show real excitement and appreciation.  Samuel loved every moment and did himself and us proud (we took some great pics), but as soon as we got home it was like it was forgotten and he just was wanting whatever was next.

A massive plus to Samuel's personality is just how much he loves his family.  He loves caring for and helping look after his brother and sister, and he would often bend over backwards to do so.  It seems as though he has a mature side to him when asked to entertain or just generally help with the little ones and this is just a joy to watch.

Now as this will be spread over a few posts I want to now share just a small bit about the school side of things.  Karen applied for a Statement of Special Education Needs for Samuel after he started school, and after a battle with his school, she managed to achieve this for Samuel.  This enabled for him to have a teaching assistant at school for 10 hours a week.  This was put into place at his first school, so at just 5 years old he was already needing help.  Karen knew that the statement had to be reviewed every year and she also knew of what a massive job she had to do just to ensure Samuel kept his statement and thus the support of a teaching assistant.  Karen managed like the Supermum she is to keep getting it renewed each year and by doing this getting the help Samuel needed just to get by as best he could.  Now considering as each school year passed Samuel dropped further behind his peers, Karen managed to get Samuel up to 20 hours per week, and his school were putting in additional support on top of the statemented hours.  To all intense and purposes he was getting nearly full time support.  Our next massive task and challenge was to try and get Samuel accepted for a special needs school as Samuel would have just shrunk without trace once he got to secondary school age.  Also already evident at school was the mainly verbal bullying that had started, and this was wearing Samuel down.  After yet much fight and various reports to try and help get Samuel into special school we finally got the news we wanted early this year and he was accepted into a local special school.

As a family we were just so excited about this.  Samuel has been at his new school for three weeks and the difference in him is fantastic school wise.  He loves it.  So any parents out there thinking can we/ can't we, push for special school and don't be put off my the stigma, please do it your child will flourish and they are what is important. 

Anyway Samuel's disability will never go away and certain aspects may get worse, but we as a family we are here to help, love and support him all the way through his life.  I will stop here as I still have more but hey we have time.

In Part 3 I will explain about Samuel's speech and language difficulties, and the difficulties he faces with communication and understanding; the ups and downs that I have with Samuel and his obsessive behaviour that can, at times, drive us up the wall (except the last time Karen told Samuel he was driving her up the wall, he replied with a simple "but I can't drive mummy").

Please keep supporting me by reading about this amazing little fella.  Thanks